Posts (2925)

3 hours ago · My sister Jill's treatment plan at Mayo in Brain Tumor

Hi Nancy,
Thanks for this update. How is your sister doing post treatment? How are you?

5 hours ago · Caring for someone with dementia / Alzheimer's in Caregivers

Hi @IndianaScott, @sallysue and @kdawn32,
Because my search returned so few evidence-based research studies and so many caregiver-reported cases, we took the question to a couple of Mayo Clinic neurology experts who specialize in dementia. Drs Nilufer Taner and James Watson wrote:
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“Increased sensitivity or tolerance to pain are not symptoms typically associated with neurodegenerative dementias. Indeed, these dementias (e.g. Alzheimer’s disease, dementia with Lewy bodies etc.) do not involve the peripheral nervous system nor the brain regions involved in pain perception.

That said, people with dementia, particularly those in advanced stages can suffer from a variety of problems that can lead to pain (such as bed sores, musculoskeletal pain due to reduced mobility etc.). Furthermore, their behavioral responses to certain situations can become enhanced or distorted which can conceivably influence their responses to adverse sensations or situations such as pain.

Having said all this, to the best of my knowledge there are no concerted studies investigating pain perception in dementia patients (ideally in the mild stages), so it is possible that we, as physicians and researchers, do not yet know all aspects of a potential pain-dementia relationship.”

“I agree with what my colleague said and add that people with dementia can sometimes perseverate [repeat or prolong an action, thought, or utterance after the stimulus that prompted it has ceased] on things as well which can influence this sense of those around them that there are periods of more pain issues. The pain issue may not have changed, the patient with dementia’s focus on the pain issue may have changed. Pain medications are challenging in their usage in people with dementia as the medications can further cloud cognition or slow cognitive processing. Distraction and things that keep a patient actively engaged in other things is often useful in these situations.”

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Hope this helps.
Colleen

17 hours ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi @jentaylor, I see you were asking about stem cell therapies. @windwalker is quite right that

The use of regenerative medicince (stem cells) is still in early days for lung regeneration. You can read more about Mayo’s research here: http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/lung-regeneration

There is a great deal of hope and a great deal of hype about stem cells. That is why Mayo Clinic offers a free consult service. When you call the consult service, they will tell you about the availability of approved stem cell therapy at Mayo Clinic and elsewhere, and for what conditions. They can also tell you about research studies that are actively recruiting participants. Furthermore, you can add your name to a database to be notified when additional studies and information become available. You can learn more about the Consult Service here http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service.
Or call 1-844-276-2003 to speak with one of our experts.

1 day ago · Caring for someone with dementia / Alzheimer's in Caregivers

Hi @sallysue and @kdawn32,
I was intrigued by your question regarding pain perception in people with dementia. I have seen this same inconsistent reaction to pain in my uncle. I set out to research for information about it. The research literature revealed a couple articles of note:
– Altered pain processing in patients with cognitive impairment https://www.sciencedaily.com/releases/2015/05/150529131509.htm
– Pain and temperature processing in dementia: a clinical and neuroanatomical analysis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4620514/

What caught my attention is that my Google search returned several results for online forums where exactly this topic was discussed among other caregivers who witnessed the same phenomenon. It is obviously a topic that requires further study.

PS: Sallysue – here is how you can start a new discussion on a new topic in the Caregivers group (for future reference):
1. Go to the Caregivers homepage https://connect.mayoclinic.org/group/caregivers/
2. Click START A DISCUSSION.
3. Write a title.
4. Write your message. (You can even @mention other members you would like to have join the discussion.)
5. CREATE DISCUSSION.

1 day ago · [Tip] Filter your Connect emails into a folder in Just Want to Talk

The number of emails from Connect can make it difficult to see your regular mail. Here’s a tip for sorting Connect-related emails into a folder.

Set up a filter or rule. (It is called different things depending on which email client you use, i.e., Gmail, Outlook, Yahoo, etc.) This will send all the Connect emails into a folder and bypass your inbox. Then you can choose when to go through your Connect emails and spend time with the community.

Use the key word “@email.healthcareinnovators.com” as the filter.

Here’s how in Gmail. https://support.google.com/mail/answer/6579?hl=en

  1. Open Gmail.
  2. In the search box at the top, click the Down arrow.
  3. Enter your search criteria (many options are provided but you only need to fill in one) I put “@email.healthcareinnovators.com” into the “Has the words” field.
  4. At the bottom of the search window, click Create filter with this search.
  5. Choose what you’d like the filter to do. For example, Go to a specific folder and Skip the inbox.
  6. Click Create filter.

Instructions for Outlook https://support.office.com/en-us/article/Manage-email-messages-by-using-rules-50307363-0e79-4f6a-95c0-04b922a2ff13

Instructions for Yahoo https://help.yahoo.com/kb/SLN15994.html

3 days ago · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

Hi @jenapower,
This is Colleen, the Community Director. Thank you for your private messages to me. I responded to both of them and am kindly waiting for your reply. If you didn’t receive my private responses, please feel free to contact me using this form https://connect.mayoclinic.org/contact-a-community-moderator/

3 days ago · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

@sandytoes14 and @contentandwell – The @mention feature is working for me. Please private message me if you are still having issues with it.

3 days ago · Empty Sella Syndrome in Brain & Nervous System

Welcome @sharenka,
I moved your message to this existing discussion on Empty Sella Syndrome so that you could meet other members like @aprillelain @rmueller628 @jes078 @sandhya60 @cindybrown as well as @kariulrich. Simply click VIEW & REPLY in the email notification to see the entire discussion.

ShaRenKa, have you considered getting a second opinion?